Sick of Being Sick: Letter from a Reader

Following is a letter from Travis that I feel is an all too common story. I’ve pasted his entire letter below with his permission, but the summary is that he has finally figured out that food is at least part of what is making him feel so sick, however he’s feeling overwhelmed and frustrated in trying to figure out WHICH foods, and how to eliminate them without starving.  My lengthy response is also below. Spoiler: I can’t really tell him what to do, but I can offer some direction on how to figure it out.

Hi Corn Allergy Girl,

I feel weird calling you that but I don’t actually know your name. Since I was about 10 years old I’ve always felt sick experiencing symptoms that have affected nearly every functioning piece of my body. It started out with just the and swelling of the joints in which I would take an over-the-counter NSAID of some sort and later, see my doctor in which he would denounce as growing pains. Sometimes the pains were so intense I’d start bawling because my shoulder or knee were throbbing and there wasn’t a pain reliever on or off the market that would touch the pain. At thirteen the symptoms spread to my stomach. A lot of things I consumed would hurt my stomach sometimes leaving me in the fetal position in so much pain. Later on, I’m diagnosed with an infection known as h. pylori found by a colonoscopy. The doctor treats me for it and my stomach doesn’t hurt as bad for a while. When we go back for a reevaluation I tell her my symptoms are still present but she says the ailment probably left me with Irritable bowel syndrome so I accept that.

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Ask Corn Allergy Girl: Glycerin

The Question

Hi there,  I was just diagnosed with a corn allergy and your website is so helpful.  Thank you for all the time and care you have put into sharing your knowledge!!  Question — I know some glycerin can be corn derived.  I have a hand cream that has glycerin and I emailed the mfr…they said the product is corn free and the glycerin is a synthetic form.  Does this answer the question?  I am not educated enough to know if this guy is not educated enough to answer me properly!!
Thanks so much.
Valerie

The Answer

Hi Valerie,

Your instinct to question the accuracy of that answer is totally correct. It’s not usually that manufacturers are trying to lie to you, it’s just that they don’t really know enough about chemistry to be able to answer your questions. When people say an ingredient is synthesized, always ask: “Synthesized using what?” You can’t just create something out of thin air, after all. There must have been some starting materials.  If they say something generalized like “citrus fruit” or “plant cellulose,” ask WHICH fruit, WHICH plants. And then still try carefully. 🙂 
 
As it turns out, it is actually possible to synthesize glycerin from a non-corn source. Here’s the big secret of how I figured that out: I looked it up on Wikipedia. Under the section about production, they mentioned that it can be from vegetable fats or indeed that it can be synthesized. If you click on the links for the materials they list as the building blocks for synthesis, you’ll see they are all petroleum sources. That’s interesting though. I have literally never seen anyone say they use glycerin from that source. It’s always vegetable. 
 
Best of luck with your new diagnosis. It’s a wild ride, but if you just take it one step at a time you’ll be fine.
 
Cheers,
B. 

Ask Corn Allergy Girl: Finding a Compounding Pharmacy

The Question

Hello,

I recently developed an allergy to ALL of my prescription medications. I take several of them and they are medications that I desperately need. Everytime I take them I have itching. I researched all of the ingredients and found that they all contain the same fillers & inactive ingredients. The common ingredient is magnesium stearate, but I’m not sure if it is the specific culprit. There are so many. I am having trouble finding substitutes that do not have all of the same exact fillers or any fillers for that matter! This is so frustrating! I don’t know what to do. Even OTC meds have all the same crap. I have prescriptions that need to be filled right now, but I am afraid to. My pharmacist thinks I’m crazy and we got into an argument over it. I live in a rural area where there aren’t any compounding pharmacies. Do you know of a reputable national compounding pharmacy that uses pure medication without fillers? I am going to an allergist next week. I hope she believes me & is will to try a REPUTABLE compounding pharmacy that uses pure medication without using crushed pills. Please I would appreciate any suggestions.

Thank you!
Sheri

Some Background: There’s Corn In Medications?

If you look at the inactive ingredients of just about any prescription medication, chances are you will find at *least* one item from the corn allergens list, very likely corn starch. What to do then? Sometimes you may be able to find a version of the medication that is either corn free or has little enough corn that you can tolerate it. If not, you may need to have some of your meds custom-made for you with ingredients you tolerate. There are pharmacies called compounding pharmacies that can do this for you.

My Response to the Question

I have been exactly here and it’s scary and frustrating.

First, are you on the Facebook Corn Allergy group and/or the Delphi Avoiding Corn Forums? If not, join one or both of them immediately. You need some support, and there may even be a member of one of those groups who is in your state and already has a pharmacy they are working with.

There are a couple of reputable national compounding pharmacies. College Pharmacy is one. However the “big guys” that can ship to every single state rarely use custom filler, and I find it highly likely that you will need to provide your pharmacy with a custom filler you know you tolerate. If not now, you probably will later. So rather than go for a national compounding pharmacy, it would be better if you can find someone more local to you via the Pharmacy Compounding Accreditation Board.

If I were you, I would use that registry to find someone near you, either in your state or in a neighboring state, and ask them:

1) Do they make their custom prescriptions out of the pure drug, without fillers, and mix in their own fillers on site if fillers are needed? (Some “compounding” pharmacies get the drug already diluted with corny fillers, and this will not work for us.)
2) If fillers are required, are they able to use a filler that YOU provide, if you are unable to tolerate any of the fillers they stock?
3) If you do not tolerate the soap they use to clean the capsule machine (many use Dawn which is corny), would they be able to use a different soap for you?
4) If you do not tolerate the gloves they use to handle the meds, are they able to switch to a different type?

The answers to all of the above should be yes in order for you to do business with a pharmacy. Even when they answer all your questions correctly, be prepared that the first time you fill a script, it may not be successful, so don’t go ordering a 90-day supply to begin with.

Note that I personally do not need to have them use a custom soap on their capsule machines, however my pharmacy is willing to do so if needed and that is comforting to me. At the time of writing I have them use Karlin’s Finest Baking Soda for a filler and Letco brand gelatin capsules. They don’t use custom soap on their capsule machines but they do refrain from stuffing their bottles with cotton and I have asked them to not use packing peanuts when mailing my prescriptions.

Getting Medications Compounded on News for Corn Avoiders

My Additional Notes on Getting Medications Compounded